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It is intolerable to still be battling the health system over its ridiculous decision-making processes and its inability to deal with the whole person rather than just focus on one of their health issues. I really resent it, as I don’t know who to contact when the DHB is behaving badly and not living up to their promise of best care for everyone – http://www.waitematadhb.govt.nz/About-Us/Our-Promise-Values

Since my visit to Waitakere hospital’s ED department on Tuesday 10 May which resulted in the lancing of the huge  and inflamed sebaceous cyst on the back of my neck, I have had to have dressing changes for the wound every other day. After several weeks it was obvious to my GP and to all those involved in the constant dressing changes I needed that a permanent fix was required as the sebaceous cyst was still oozing and would have to be completely removed, probably under a general anaesthetic.

My GP referred me back to Waitemata DHB. Weeks went by and two weeks ago I began trying to find out when I could expect to get an appointment. After several telephone calls with one of the booking staff which involved my explaining that my limited life expectancy must be taken into account, I was told last Thursday that the referral from my GP was graded as P3 and I would not get an appointment for four months! How does the doctor who made that decision know that I will still be alive then, I asked her, or that if alive I will be in a fit state for surgery? Does he or she know that I have pancreatic cancer? She was unable to answer my questions. I suspect that the decision was made solely on the basis of the sebaceous cyst, and not in the context of a cancer patient with a very limited life expectancy.

Having to have dressing changes every second day is making it increasingly difficult to make the most of the months I have left, to travel out of Auckland for more than a few days at a time, for example. The wound has now become very sore, and at a time when I had hoped to be free of the health system for a few months I am tied to having to have dressing changes for a constantly oozing and increasingly painful wound, and unable to make travel plans with my family and friends

When I told my GP I would have to wait four months for an appointment, he sprang into action on my behalf, but to no avail. Fortunately, I then received a completely random phone call from Waitemata DHB about a patient story I had done for my brother who died at Waitakere hospital in June last year – see http://www.waitematadhb.govt.nz/Patients-visitors/Patient-stories

She wanted to tell me how my story was being received, and also to know how I was doing. When I told her about the current problem with the DHB, she said leave it with me. A few hours later I had an appointment to see a surgeon on Monday 4 July.

The issue of how patients with more than one serious health problem are dealt with by the DHBs in Auckland is not unique to me. I have friends and family who have had similar problems, and friends who are currently having similar problems. The silos of different diseases and body parts that our health system is divided into doesn’t work for patients, and often works against their health and well-being. Things need to change and time is running out for me.